Community engagement and informed consent in the International HapMap project.

Published

Journal Article

The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.

Full Text

Duke Authors

Cited Authors

  • Rotimi, C; Leppert, M; Matsuda, I; Zeng, C; Zhang, H; Adebamowo, C; Ajayi, I; Aniagwu, T; Dixon, M; Fukushima, Y; Macer, D; Marshall, P; Nkwodimmah, C; Peiffer, A; Royal, C; Suda, E; Zhao, H; Wang, VO; McEwen, J; International HapMap Consortium,

Published Date

  • January 1, 2007

Published In

Volume / Issue

  • 10 / 3

Start / End Page

  • 186 - 198

PubMed ID

  • 17575464

Pubmed Central ID

  • 17575464

Electronic International Standard Serial Number (EISSN)

  • 1422-2833

International Standard Serial Number (ISSN)

  • 1422-2795

Digital Object Identifier (DOI)

  • 10.1159/000101761

Language

  • eng